Susan's Blog

Sunday, September 21, 2008

Much Ado About Lunching

I wrote the recent “Lunch Hour” post about Nat and me, out at Paparazzi on Friday. I took him there after his annual checkup at the doctor, right before his annual EKG (because of the Resperadone). I wrote the post that way, in third person, because the idea occurred to me during our lunch. I was keenly aware of how nice it was, eating in this pretty, elegant place with my grown-up child.

As we ate, I kept glancing at Nat, so composed, so much a delightful young man, (and so well-behaved!) that I realized that no one around us would ever guess that he had a profound disability. To think that this was the same person who — God forgive me — made me feel imprisoned by his unpredictable behavior. Who, at age two, had cried incessantly at every family gathering. Who, when he was four, cried and yelled through an entire meal at a Cape restaurant while the host tried to get him to stop or us to leave (he didn’t; we didn’t. Three years later, this was the same restaurant where Nat showed us that he had learned to read: W-H-A-L-E spells ‘whale!’) Who, at eight, tossed a pieced of chicken or something into the air which hit at a man at a nearby table. I could go on and on. I would never have believed us today.

I kept imagining an observer at another table, listening to our staccato, syncopated, but acceptable conversation. The way Nat would look at me, dutifully, politely, when I spoke to him, and who would answer, but clearly would rather have been eating the delicious thing he was waiting for. The way I was listening in on those around me. The annoying women behind us, who were so squeaky and loud, talking about the shallowest things. The men having lunch, one of them, the one with the shaved head, looking over at me a little too much.

My lunch guest was handsome and sweet, sunny and attentive. A little quiet for me (my lunch companions are usually un-shut-up-able, in the good sense) but beautiful to look at. So I ate, looked, and felt my pride rise and cover me like a warm heavy comforter.

Saturday, September 20, 2008

Spinning Song

So happy yesterday; Natty home and just bursting with his whispers and smiles. He seems so happy to be here, so happy to be. Oh, God, thank you. My own happiness felt like a sugar rush; a candy pink-colored indulgence. I knew I had to dance after dinner. I had to practice what we learned in Najmat’s class: abdominal posture and a new traveling step. But I was also in the mood to go free and wild, which meant veils.

These days what I love to do is mix and match a top and a skirt. This works really well because so many of my costumes are different shades of pink and lilac. Although it doesn’t look like a traditional Egyptian costume, it works because I bring all of it together by using accessories that match the top or the skirt. I chose my long, straight Safti skirt, which is just fuscia and silver, and a bedlah top with lots of fuscia, silver, and lilac beading and fringe. I wore one armband from the Safti outfit, to tie in with the skirt, and a gauntlet from a Pharaonics costume, which is made of sheer net and lots of pink and silver beading, so from a distance it looks like the beading is directly on your arm, like a tattoo.

I asked Ned to go to the car and get my first Natacha Atlas CD, because that stuff was pumping through my brain. Even though I’ve listened to it all ad nauseum, I am still obsessed with it. With Arabic music, just when you think you know what it’s going to do, it does something else, like a syncopated beat or a little trilling thing, or a very faint, deep male chanting like something out of the Aida tomb scene. It just fills my head and I see dark spaces with mosaic walls, silver candlesticks. Or I imagine dervishes, or Petite Jamilla, or Erzulie from the Middle East club doing paddle turns.

The abdominal posture is so difficult, but it is a joy, too. Naj taught me something I had never known before, in my three years of bellydance: you pull in at the lowest part of your belly, and then way up with the rest, also pulling in. This gives your belly that concave, S-shaped look that bellydancers have, like shifting sand dunes. I was ecstatic to see my profile looking like that, my multiple-birth-stretched torso looking smooth for moments at a time, when I had it right. It is one thing to stand in front of a mirror and do it. It is quite another to do dance moves and stay like that. But if you do, you achieve perfect isolations. That is how they all do it. The more absurdly lifted you can be, with the entire core pulled in and way up, the more your hips will look like they can just detach from you, just roll away on their own! (Now I practice this posture discreetly all the time, sucking in the lower belly, shoulders back, etc. Even on my bike.)

I put on “Ezzay” which has some Indian influences, and there’s a part near the beginning that sounds like parts of a Hebrew prayer. It fascinates me the way the Hebrew and the Arabic music and culture intersect and where they don’t. I get a taste of the exotically foreign and a sip of the comfortably familiar at the same time.

Ezzay just demands veil and spinning. It is very fast-paced, swelling, and orchestral in its sound. It swirls around you like a strong wind, so that you feel you have to turn and move quickly. Visualizing out-of-control wind helps me move correctly with the piece. And last night I found that I was not spotting at all, the way they teach you in ballet; instead, I was closing my eyes and spinning, just trying to remain upright and maintain my orientation. I would just spin and spin with my veil high, until the room would start to tip, and then I would stop, eyes closed, and try not to fall over. Ned thought it was funny, but the thing is, I was really beginning to get it. I was not sick at all, I only had a mild headache from it. What I’ve read about dervish spinning is that eventually your inner ear adjusts and you don’t even get dizzy. I actually felt some strange sensations that were kind of like being high.

I also tried paddle turning, and I figured that one out, at last. You stretch your arms out wide holding the veil in front of you. As you turn, you tilt one arm up with the other down, as if they were part of the same paddle. At the same time, you look over the shoulder that is going up, and then the other, so your head goes back and forth. You are paddling, turning, and moving your head all at once, and you try to go faster and faster, throwing your arms up then down so that the veil swirls in one direction, then the other, but also hugging your body.

I knew I had it right after awhile because it all felt automatic, and I was less and less in control of my spin. I was spinning around the room this way, and it was exhilarating. The loss of control while moving was so exciting, I just kept doing it. I was like a little kid again, spinning and spinning without worrying where it would lead. And I did not get sick!

Ned said it looked choppy, which annoyed me, but I knew I had gotten it right, and that over time it will smooth out, like one’s bellydance belly.

Friday, September 19, 2008

Lunch Hour

A man and a woman walked into a restaurant together. He was tall, thin, and blond. She was older, darker. Their faces seemed somewhat alike, with full red lips, well-defined chins and nicely shaped large noses. The man was a few feet in front, taking large steps into the dining room, apparently eager to be there. The woman was slower, looking around, taking in the dark woods, the high ceilings, and the white tablecloths. They sat down across from each other in a booth. The woman opened her menu and studied the offerings. The man left his closed, not as interested. A waiter came over to take their drink order, and the man ordered a Sprite, while his companion asked for some water.

They pored over their menus and after some discussion about types of pasta, sauces, and salads, they settled on two Caesar salads and a chicken parmagiana. The waiter brought their drinks, announced the specials before anyone could stop him, and then the woman ordered, checking with the man, who mumbled his choices. The waiter looked a little confused, and the woman briskly repeated what the man had said.

The man’s salad came first, and he started picking out the croutons and pulling off the shavings of cheese. The woman offered to take the cheese. He gave her all of the papery yellow slices, and then dumped the entire ramekin of dressing into the middle of his salad. He shoveled the gloppy lettuce into his mouth, occasionally picking pieces of cheese off his tongue. The waiter refilled the man’s soda and took away the other glass, which seemed to puzzle the man.

They sat in silence, while he ate. The woman gazed at the man’s face, with a smile on her own that was radiant. He rarely looked at her. Now and then the woman would ask something or mention this or that about nothing in particular. The man would always answer “Yes,” courteously, but he never said anything else but that.

At last the woman’s Caesar came, along with the chicken parm for the man. He immediately scraped off the cheese and the woman took it, and dripped a large wad of it into her mouth. The man cut the slab of flattened chicken into large pieces and chewed with gusto. The woman said that her salad was “so good,” and repeated this when the waiter came over.

When their meal was finished, the woman wondered if they should look at desserts, and the man agreed immediately. As the woman began reading the choices out loud, the man interrupted her and said, “Chocolate,” and that was decided. “A decaf and the brownie sundae,” the woman told the waiter.

The brownie sundae was a mountain of ice cream, cake, and hot fudge, in a fishbowl-sized glass. The man dug into it, allowing the woman one taste. She then had to satisfy herself with sweet coffee and with watching him greedily consume the dessert.

He stood up when he was finished, and seemed to want to leave. He picked up his empty glass and looked as if he wanted to bring it, presumably, to the sink. “No, darling, they will clean it up,” she said. “Sit down, I have to pay.”

He watched intently while she signed. There was never any question of who would pay. The woman was clearly in command of this particular aspect of the relationship.

They walked out, he in front of her, into the sparkling sunshine. They were both smiling. And no one in the restaurant was any the wiser.

Thursday, September 18, 2008

My Very Happy Catepillar

Come climb with me, up the Metaphor Mountain.
Drink from a simile fountain
Where children are soda pop and sasparilla
and then they moult like a catepillar

Some people just bubble over you with their thoughts in a constant stream, fizzy, clear, and satisfying. Sprites. Others leak out drops here and there, almost always a surprise, but always worth contemplating. I know that I am in the first category, and Ned is in the second. It is funny to me to see where my children fall in the Thought Bubble Spectrum.

Benj, more and more, is a Bubbler. He seems to be springy, noisy, and full of music these days. Ever since the summer, I have noticed him morphing from prickly green catepillar (down to his perpetual camouflage pants and camouflage hat) into a butterfly. (This is funny to me, because right now his class is studying catepillars and butterlies. Ben revealed this to me the other day in typical Ben fashion, saying suddenly that he “hopes Cheesepuff will live.” But as usual, Eminently Wise Mommy proved a sham, and had to ask who the heck was Cheesepuff. Cheesepuff, it turned out, is the remaining catepillar in the classroom exhibit. No one knows what happened to the other two. Mr. C asked the kids to describe the situation, and Ben’s theory was that Cheesepuff ate them. He reasoned that Cheesepuff was “constepated” from his feast and was, therefore, not moving. He then drew a comic illustrating the whole drama.)

Ben is happy, (knock wood), and there is no doubt about it. The more obvious changes are that he doesn’t hate school, he is no longer rude to adults, he is flexible, he does his homework dutifully and well, and he actually goes outdoors during recess and on some playdates.

Less obvious yet absolutely clear to a Discerning Mother’s eye is the way he seems to float. He bounces, literally, from the stairs onto the floor every morning. He does flips onto the livingroom couch. He climbs up the doorjambs. He is happy.

Why? I have my theories, complicated and tangled. I don’t dare to write them. Who really knows why their children improve and leave their husks and fly? Sometimes we just have to sit back and watch.

Monday, September 15, 2008

My I.E.P.

I guess I would say it was a successful weekend. Funny that I have to think that way, as if my days are one big checklist of tasks and goals. My life’s IEP. Here’s what it would look like, if I had one:

Description of student: “Susan is a fairly bright, pleasant person with a strong sense of justice and aesthetics. Strengths are in parenting, writing, physical activity, and an ability to cut through the “bullshit.” Weak points are in modulating her emotions, organization, self-anesthetizing through food and other undesirables, and obsessing.”

Long-term goals, or where would you like to see the student 5 years from now? “Susan should be more adept at managing mood swings, creating and maintaining structures that help her stay organized, utilizing healthy outlets for tolerating difficult feelings. She will have let two of her sons grow up and move out of the house, while guiding the youngest towards same. She should be utilizing her writing ability to earn more money and continue the perspicacity, running, bellydancing, and cycling without popping knees or wrenching hips. A haircut would be nice.”

How will you effect those goals?

1) Organization a): Get Mr. Ned to go to Staples and pick out adequate binders, paper clips, highlighters, pens, etc., for teaching job. Use said binders 80% of the time.
Organization b): Purchase only one more amazing costume for dancing in. Try to sell other ill-fitting cossies on E-bay or Bhuz.
2) Moods, emotional a): Stay in touch with whatever doctors or professionals or friends or family members help with the mood thing. Call people back 80% of the time, check e-mail 80% less.
Moods, b): Attend Najmat’s class regularly for maintenance of belly, mood, and confidence.
3) Physical Maintenance: Do leg weights three times a week to strengthen areas around knees. Stretch before and after dance, riding, running.
4) Children and love: a) Continue to bring Nat home Fridays and return him to House at designated date, crying only half of the way home, 80% of the time.
b) Praise and encourage Max and Ben to do things with Nat, such as baking.
c) Let Max move his room to the third floor
d) Get Ben piano lessons, continue the swim classes
e) Let Ned talk at least 20% of the time.

I accept the plan and placement as presented.__________________________________

Thursday, September 11, 2008

On My Mind

What is going on right now:
1) Thinking about 9/11 and one of the best books written on the topic, Extremely Loud and Incredibly Close, Jonathan Saffron Foeur. I can’t believe that really happened. And they took off from here. God help us all.

2) Reading Getting Rid of Matthew, by Jane Fallon. So-so so far.

3 Glowing from the way my class went today. Such earnest, hard-working students, bright and friendly. I brought them Dunkin’ Munchkins for the midpoint break (why not? class is right during lunch and I’ll just bet a bunch of them haven’t eaten a thing, and this way I get more out of them.) I can’t believe how much I love teaching essay-writing. It is something I know intuitively and can do in my sleep; but teaching it, explicitly breaking down the components, is new, challenging, and exciting.

4) Finished interviewing another autism parent, and got a lot of good material. It is very hard asking the questions I need to ask because they don’t really know me, and may find it hard to talk about difficult emotional things (unlike some people!)

5) I just adore the turquoise blue lace top I bought this summer at Karol Richardson in Orleans, and it was the perfect temperature today to wear it.

6) I had to walk to school to pick up Benj because Ned took my car (I really enjoyed it, because I ran into all sorts of school friends of mine who usually walk to school. I drive, because I’m a Primadonna). The Squirtle is officially in extremis, nearly dead. He has 148,000 miles on him, a cat-shaped mark on the passenger door (from you-know-who) and now is growling because his muffler is falling off. But he’s not scary, because: he’s only a Squirtle 1994 Civic! So — Ned is buying a new car tonight! A Civic Hybrid. As he put it, “I want to be the change I want to see in the world.” My sweet, idealistic darling.

7) I am surviving a detoxification. Very little caffeine, no sugar, only a tiny bit of of Splenda. I actually feel good!

8) Ben is happy most of the time, knock on wood infinitely

9) I made a new calendar for Nat so that he would never be confused again about where he sleeps and when.

10) It is my former therapist’s birthday, which gives me something good to remember about 9/11. She pretty much saved my life; I started seeing her when Nat was 2, so… I called her today to tell her I loved her, and thanks.

Wednesday, September 10, 2008

Buzz Lightyear Really is a Superhero

Thank you, Guy Rude, for sending me this absolutely wonderful story, of a dad and his autistic son lost at sea. (Don’t worry, Dad! They make it! ) Read to the end about how Christopher helped calm his dad. Oh, man, Ned and I laughed and cried at the same time. Enjoy!

TCBB

Dipping myself into the shallow end of the pond today. I throw off the leaden shackles of despair because things are 180 degrees improved with the House communication. Natty makes the calls and we have… a conversation!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Which I, finally, end because….I am out of stuff to ask!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! He says “Good bye”!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! A kid who could not answer yes or no at 4.

Development, good school program, lots of love, air and water and sunlight and THEY GROW AND IMPROVE. Forget the actual diagnosis. It’s only a word.

I kick the soapbox out from under my feet and continue:

Ned’s working from home, it is sunny enough for a run or ride, my class went well yesterday, Nat was okay on the phone. The fragile balance holds, ever important to a Libra.

So my light thoughts turn to TCBB: Taking Care of Business, Babe. School newsletter. Autism Book 2 interviews. Keep Beastie bouncy. Get Max to grunt a little about his day. Quality time with Ned. Bike to repair shop (Mr. Y has a sudden and mysterious flat tire, oh the betrayal!) Getting my new computer, with the educator’s discount(!) (Precious only has 9 letters on her keyboard. Her lid cannot shut. She is slow and creaky. But she is like an old friend. She helped me write MPWA and Dirt: A Story of Gardening, Mothering, and Midlife Crisis. How can I junk her?

Oh, but I can. I am going to have to upgrade because, well, it’s time.) And if I sell Dirt — which is at the fourth editor now, the first three having declined — I will get the upgraded MacBook modded cotton candy pink (thanks for the suggestion, Max!)

Monday, September 8, 2008

Tangled Up in New

I have been able to untangle some of my sadness. I think that it is impossible for me not to project some of my own imaginings and feelings onto Nat, who does not tell me a whole lot about his state of mind. I have always had to feel and to guess, and also to ask and to listen.

So I think that I am sad about Nat being gone and about not seeing him daily. It is still so new. I am sad because I just plain old miss him. I’m sad that he is going through a transition and probably does not understand a lot of it. I am sad because I had not been hearing from him or about him as much as I needed and wanted to.

So Ned and I figured out a strategy. We need more daily communication. We need email lists of what and how Nat has been doing, both emotionally and regarding his IEP. We need to know that he is getting consistent, thorough care. And he is, but I want the specifics. I may be micromanaging, so sue me.

This morning I emailed the staff with a list of specifics, what I wanted and what I did not want. Ned talked to the House director last night, with much of the same. I talked to Nat’s teacher today and vented for a long time. She let me cry and whine and she listened better than a therapist. She also had a lot of information for me, such as how the Houses work and how to improve communication between Houses and the families. She totally gets Nat, and she is just an incredible human being, God bless her, and thank God she chose this field.

So Natty Darling called me tonight, saying, “Hi who’s this?” which is kind of how he’s learned how to talk on the phone.

“Hi Darling! It’s Mommy!”

Then he gave me a whole list of what he did today, school and House, down to helping make dinner and vacuuming. He just always always does what he can. And I told him that he was coming home for Friday night and starting his favorite social group, the one with the local kids, and on Sunday: Red Sox game with his other social group!

And so, tonight, after taking in all of your thoughts and love, and lying with my head in Ned’s lap, talking to Mom, Dad, and Laura, kissing Max’s hair and helping Ben think of a Halloween costume, and then taking Lisa’s advice and having a lot of chocolate, I am feeling pretty good, my hope and my fat belly safely restored.

Sunday, September 7, 2008

Plight

I ask my God who gives us light
What is wrong and what is right
What to do about Baby Delight
Keep him there beyond my sight
Or bring him back and hold him tight
Is he learning more, day and night —
Will it make his future more bright?
Or is it kind of a lie that’s white
Though guilt may claw and grief does bite
But here or there — let go or fight?

Saturday, September 6, 2008

Guilty

I’m sad about Natty. I can’t help it. I am so afraid our bond will grow weaker without daily contact. I miss him so much, even if we don’t talk or do anything of substance together. Even if he just sits on the couch and seems not to notice me. The point is, I notice him! And I feel our connection, even if he is quiet.

But I feel it less with him not being here. That breaks my heart. Talking on the phone and visiting there is unsatisfying. It is artificial. It is not what we’ve always done. I keep seeing him, imagining him, and then realizing he is not here and what does that mean? How did that happen, that now this is the thing we do? Just like when I first sent him to school.

When he was little and he first had to go to school, I felt kind of the same way. I felt like I was betraying him by sending him off to school, rather than just keeping him here with me. I felt like because I was sending him to a special needs program, it was making it more true that he had a disability, and that made me so sad. I felt so sorry for him, having a disability. I felt guilty. I felt responsible, because I brought him into this world, and shouldn’t I have seen to it that he had all he needed to live in it safely and happily?

Gradually I got over it. I got used to it. He grew into being a student. I got used to not having him here in the mornings. I could spend time with my baby Max. I didn’t have to think about what I should have been doing about the autism. I am so sorry to offend people with autism when I say things like that, but speaking as a mother who really wants everything for her kid, I needed to mitigate the autism, or the things that went along with it, like language impairment and sensory defensiveness and aggressive behavior.

So now he has to go and live apart from us to be with specialists around the clock, to help him make up for some of his deficits. It feels a little like he is being punished for being autistic. He doesn’t get to live here because he has to overcome and compensate just to survive out there.
And the thing is, he has that disability because of something physiological that didn’t connect quite right while I was carrying him around inside. That is why I am feeling responsible.

I’m so sorry to bum you all out, you other parents who are trying so hard to find hope and get beyond grief and guilt. I feel like I’m supposed to be some kind of role model or something, because I have been there, or been through it. But I’m really not. I’m not finished yet with him in this way. I want him back. I don’t want him to get used to it, because then there will be less to our connection together. Today on the phone he called the House “home.” That made me want to cry, yet when I told people I tried to be happy because I knew they thought it was a good thing.

I’m trying so hard not to be so ugly and wallow-ish, but the suffocating humid, gray day just got to me. Don’t tell me to snap out of it. Don’t tell me I’m being selfish. I’ll just delete you. I’ve got to say this. I’ve been carrying around this lump of disgusting emotion in my throat and belly, and I’ve just got to vomit it out onto this screen.

I want him back. It is too soon to let him go. It feels like another betrayal.

Friday, September 5, 2008

Noticing What Is There and What is Not

Yesterday we all felt so good from our day that we went out to dinner to celebrate. I picked the Cheesecake Factory, because it is the best of the chain, kid-friendly restaurants: you can actually fool yourself into believing that you are in a real restaurant. You can get a pretty nice glass of wine, beautiful salads, and there is really nothing tacky to detract or distract.

What detracted for me was the smoothness. The simplicity of us. The family as a foursome; a non-special-needs foursome. How easy, how strangely easy. For while I was filled with a lovely, creamy happiness and sense of accomplishment from my first day on the job, basking in the nachas of Ben’s (mostly) great first day, proud of Max for going on an 11 1/2 mile bike ride on his last day of freedom, and happy for Ned having attracted the notice of one of his heroes (this is a terrible run-on sentence that I would never allow my students to create), …

…I thought of Nat.

Sometimes it feels suddenly like we are pretending we don’t have a fifth person as a part of us. That there is just no way to feel complete, for it to be supremely perfect, because even when I’m not thinking about him, I’m suddenly thinking about him. I’m afraid of my happiness because it makes me feel disloyal sometimes, when I realize that I am no longer sad about Nat.

I guess I just miss him, and I don’t know how I’m supposed to deal with the moments when I’ve realized that I wasn’t thinking about him.

Wednesday, September 3, 2008

On His Way Up

…And this is a young man who, when he was three, only twirled string in the light beams and only repeated what we said to him. To all you young parents out there: never give up!!!!

Nat’s Day

Today: September 3, 2008

Programs: E-mail, Answering phone, Chapter reading, reading comp, document reading, sightwords, respond to questions, conversation, pronouns, table top transaction, math, safety skill, wallet

Vocational: Mail Delivery, Fold Shirt, Deliver message, Stock Shelves, Follow Directions, Photocopy, Assembly

Leisure: Lots of books (he kept picking them whenever we gave him the free choice), floor puzzle, music, computer

Special: Playground (Annie was on vacation so we didn’t have music- but he did great with our schedule being slightly different due to her vacation)

Lunch: School lunch today was Mac and Cheese. He threw it away so we made him Ravioli instead. He ate that and the fruit cup.

Snack:

Note:
We started Nat on a new stimulus set for sightwords, they deal with the playground and various activities he can do while outside. He has completed the first chapter of his book and will move on once he completes his comprehension questions. For his conversations we have taken ourselves (the teachers) out of it and have some of his peers ask him questions like what special he had and whether he had fun while he was there and having Nat respond with the correct answer. I hope that eventually he will not only ask questions back, but with all of this spontaneous conversation we are all seeing this might help him gear some of it towards his friends. –Therese

What’s Your Bag?

Growth and development are a mysterious and wonderful thing. Some things shoot right up. Others do not reach fruition until much later. Still others start going one way and find themselves starved for nourishment or light; whether they change their paths or not is the challenge for them.

I peaked early (married at 21, right out of college; first two children by age 29, old autism mom by 35). Then again, I am blooming very late. I will be starting a new job tomorrow, as an adjunct prof teaching English Comp. at a nearby university. I spent most of yesterday organizing and making notes. I took B with me to Staples and picked out all the wrong stuff. Organization material is not my strong point; I am much more of a write-it-on-the-back-of-an-envelope -and-stick-it-in-my-bag (but the bag must be gloriously gorgeous). So I bought two kinds of binders, and neither one is quite right. I sat there cutting up all these plastic dividers and punching new holes in them to make it all work, but nothing did. But doing so showed me what I really do need: lots and lots of pocket separator thingies. Or maybe a bigger bag?

I met with the director and the department chair and others last week, all very kind and helpful. The director of the program made a lot of template assignments and outlines so that there is a really clear path to follow, and yet he encourages adjuncts to be as creative as they want to be, as long as they hit the four requirements. I am going to be teaching three different kinds of essay, and so I am beyond excited. As you are probably aware, essays are my cup of coffee (I hate tea). (Ned tells me I have around 100 essay-type articles on my website now, and of course, so much more churning around in my feverish head.)

While downtown, I also got a feel for the campus, which is lovely. It is in one of my favorite parts of Boston: brick-lined narrow streets, old row houses, lots of hills, the State House. I can take the T there and be at work in 20 minutes.

The best part of this job is the job. I can’t believe I get to teach at a university. This is what I came to Boston for, 23 years ago, fresh out of graduate school. But back then I thought I was going to teach history, and I could not get a job anywhere. Little did I know I was a writer, not a historian. Thank God Ned said, “You want to write? Just write.” Then I found my way, followed my heart, and here I am. I guess it’s really a matter of finding the perfect topic. And the right bag.

Tuesday, September 2, 2008

Call Me Susan (Non) Sequitur

Here is a snapshot of how I think:

I was thinking about Nat around 9 a.m., just when he was beginning his day at school. I was roaming the aisles of the Stop & Shop, feeling blue as I considered whether to buy kidney beans — his favorite lunch — or not, because, well, he was hardly ever home anymore, and, and, and… 🙁

I thought suddenly about how my dear cousin had told me how much he missed his mom, who had died, and with whom he had had a very troubled relationship. It was his belief that — because he did not know what he had actually missed with her by not being close — his grief was all the more acute. Sometimes I think that because I almost never really have long or meaningful conversations with Nat, that when he leaves, I feel like I “miss” him all the more…oh, autism! Autism!

–Wait a minute! Is that true, or am I just being Mrs. Mel O. Drama?

Conversation with Nat is very limited in words, but what that does is it forces me to sharpen all of my other senses when I’m around him, the way they say a blind person can hear better for lack of vision. So when I’m talking to Nat, I’m looking closely at him, traveling his face with my eyes, breathing in his scent of laundry and skin, and listening, listening, listening to discern words from the quiet and the jumble of his speech. It’s never as satisfying as a conversation with Max about just what it is that Libertarians believe, or Ben, where I learn things like his strange misconceptions of sex or his perpetual debate about just what kind of animal Chowder is?

It’s not satisfying that way, but I do learn about what is important to Nat. And I have to say that I may never have laughed as hard as I did recently when I figured out that when Nat goes around saying, “Pee-is,” and, “Heee-pee-is,” laughing and laughing, he is cracking himself up over that most infamous part of the male anatomy! Body humor developmental phase, check!

Last night I was straightening the many papers and flyers that cover the coffee table –as my elegant, wise grandmother who was a Pisces used to say, “you shouldn’t know from it” — and he sat down right next to me on the couch and I asked him if he wanted to watch a video. He said, “No video.” He looked meaningfully at the flyer that was in my hand — the Social Group flyer — and I guess I read his mind. “Oh, you want me to read this?” I asked.
“Yes,” he said. So I read the flyer for all the upcoming activities as if it were a story, and he listened, mesmerized. When I was done I asked if he wanted to hear it again. He said, “Mommy will go away.” He got up and picked up a video.
“Okay, Nat. You watching a movie now?”
“Yes.”

To quote my late Grandma, the big fat squooshy one who was a Taurus, “I just love him so much, I don’t know why!”

When of course, it is so obvious.

Monday, September 1, 2008

September Sky

Sparkling clean color, the sky
like glass blown thin and brittle
Arcing overhead
Annealing
The earth has turned, ever so slightly
away from me
now cooling
untouched
breakable perfection

Saturday, August 30, 2008

Love is the Sound of One Hand Flapping

Maybe there is something to the zen idea of not trying, not pushing, but merely being. All yesterday and part of today I’ve been fretting about Nat and how subdued he is. I’ve been looking for clues in his school notebook, and the notes from the House, to how he’s really been. They all say, “GREAT GREAT GREAT GREAT DAY” etc. and they give me examples. But I keep looking for signs that he’s not happy. Proof that I’ve made a terrible mistake!

When will I quit all that? You must know how I drive my loved ones crazy with all my doubt. To love me is to put up with me, I guess. But anyway, I had been scrutinizing all in Nat World when suddenly, I was sick of it.

I was tired, napful, with literally a pain in my ass from too much exercise. Heating pad and motrin and what Dad calls an “Ironman” workout made me just want to close my eyes against all the crap in my head.

I started defrosting chop meat (Ned laughs at how I say that, like a shtetl immigrant, but that’s how my Mom says it and so did hers, so it is actually therefore the most accurate form of the stuff). and I poured myself a glass of Menage a Trois wine, which I would drink but never do, not that there’s anything wrong with it. Anyway, it’s just Menage a Moi right now, ’cause Mr. Ned is tending to his coals, which is not a euphemism. This is great, kind of subtly fruity wine with a dry kick at the end. A floral nose, etc.

So I’m a little bleary, as you can see. And I was pushing microwave buttons, sipping, washing hands, peeling potatoes, when I looked at Nat and he was smiling. I said, “There you are.” And he said, “Yes.” Then he said, “Eat hamburgers and noodles.” He knew damned well I had just peeled four huge Idahos. “Nat!” I said. “You know we’re having potatoes.”
“Yes,” he said, grinning. Then he said, “Eat inside.”
And I said, “Nat, it’s nice out, so we’re eating outside on the porch.”
“Yes.” More grinning.

And a little bit of blessed silly talk, the ultimate sign of Nat’s contentment. Pretty soon, maybe I’ll see the flappy puppet hand, and my heart will burst open with wine-soaked love. And I didn’t do anything at all, no contorting myself with reward charts or suggestions of appropriate leisure activities, or attempts at conversation. Nothing except hanging with my boy up to my wrists in Kosher beef with my head in a glass of wine.

FYI, The R Word

I trimmed down and polished up a recent blog post that made its way into my favorite media source, The Washington Post. Here it is, for the record. You can never get enough of this discussion, in my opinion.

Friday, August 29, 2008

McCain’s VP Pick

I don’t usually go political on y’all. But since this is my blog, warts and all… I have to ask a few questions about the Repub VP running mate.

A newborn with Down Syndrome?!

Hmmmm. Special Needs Mom. What will that mean? I am a diehard Democrat, and yet, I am — how to say it — intrigued by what this Sarah Palin is like and how she does it, how she will do it (I mean how she will run for VP with all this on her plate). How does the baby affect her? How will she handle the potential load of 2nd most powerful person in the world if that baby sorely needs her? I would ask the same question if a man who had a newborn with a profound disability were running for something, by the way.

What policies and advocacy could that bring…has there been a prominently disabled candidate or family member since FDR? This is very interesting. Even if the Republican ticket totally tanks, I wonder if/hope that disability issues, funding, and research will make it into the minds of all Americans as an important topic to consider.

Wednesday, August 27, 2008

Distance Speaks

Perspective is a gift of getting older. More and more, I understand why my dad reminds me of how he struggled with certain issues when he was my age, and how getting older grants you the ability to see beyond them, and to let go, even with a smile. It is true: I remember how, years ago, my therapist told me to picture that younger me, struggling with something or other, and asked what I would say to her now, if I could. I felt so much compassion for that more innocent self. I felt like my own mother.

When Nat calls these days, our phone conversations are very different from any other interaction we had shared before his move-out. He never says, “No talk to Mommy.” He gets right on the phone, and even though his voice trembles with some emotion, he always talks to me now and answers my questions. He provides content, which is a very new development. It is as if, by leaving, he has been propelled to another level, where he actually feels the need to communicate with me in a way I will understand. He needs, more than ever, to connect and he seems to be aware of that. He did not ask for our street the last time we talked. Instead, he told me about going running with Jack, and how he had had Chinese food for dinner. His voice was small and a little sad — or something — but he was talking to me because he wanted to.

Last night I got a call at 11 p.m. from Max, who had forgotten to call during the day. He is in Vermont with Hannah and her family. I put him on a greyhound Monday morning, reaching up to hug his hard broad shoulders and to kiss his impassive face. Even though I felt some trepidation for him, traveling four hours on his own among strangers, I also felt the excitement he must be feeling, setting out on his first journey alone, to be with his very favorite person. I remember being nineteen, and getting on the train at Stamford, to make the four-hour journey up to Boston to spend time with my amazing boyfriend Ned. The breathless moment of stepping off the train and spotting his handsome face in his ratty clothes. Knowing we had all that time just to be together, in this fantastic fun town. My head swims with the high of that moment.

Max was a little sheepish at first, knowing that he had not done what I had asked him to do. But there was something else that shaped his tone, a softness, a curl of happiness that I had never heard from him on the phone, or perhaps had not heard in a long time. What surprised and touched me even more was the content. He kept offering information, descriptions. He told me how cows were “really disgusting, because they lick their noses, and so their faces are always wet with either saliva or snot.” And laughed. He described a beautiful large house, an icy cold pond. Crazy stars.

When I got off the phone, I felt happy, full. I think it was because for the first time in a long time, Max really wanted to talk to me.

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